Adult placements and person-centred approaches
In the placement
Standard 4 states that the adult placement scheme should ensure that carers understand and fulfil their responsibility to support service users in accordance with the key principles of adult placement.
- in the practice survey all service users felt strongly that the placement was their home, and that the adult placement carer was their family.
- written plans seemed of marginal importance to most service users and carers, and some were not aware that a placement plan existed.
- adult placement seems suitable for adults of all ages. The older people interviewed saw their placements as an end in themselves, not a stepping stone to some other, more independent lifestyle.
- the profile of adult placement carers and of service users mirrored the National Association of Adult Placement Schemes (NAAPS)/Skills for Care survey(6).
- in successful placements, the people placed were doing what was important to them, from their perspective, within the boundaries of family life. Adult placement carers were also fulfilled. The give and take required did not feel like restriction or compromise but the behaviour of responsible adults in a family setting.
- the adult placement model of living as a family unit can, however, create tensions between the user's and the carer's needs. This may be at odds with being person-centred. For example, it was suggested that sometimes a placement could only continue if boundaries are put on some behaviours (e.g. noise, late nights). These are sometimes referred to as 'house rules', and acknowledge the equality of everyone in the household.
Although ground rules had been set about an appropriate time to come home at night (9:30 during week, 11:30 at weekend), Kevin pushed the boundaries later and later. The carer felt responsible and stayed up until he came in. After involvement by the scheme, the social worker talked to Kevin explaining the carer's point of view. Eventually a compromise was reached and new ground rules agreed.
- the practice of some older long-term carers can be seen to promote dependence rather than independence.
- schemes visited in the practice survey acknowledged the challenge of changing the practice of some older, long-term carers. Some carers (including former foster carers) found the new regulatory requirements and documentation a challenge.
Dan's social worker is very supportive, visiting three times yearly, and attends his twice-yearly care plan review (along with Dan and his cousin who is his advocate). Short breaks and transport are arranged (and rearranged) quite speedily when required. Dan chooses to go to his day centre rather than stay at home for the adult placement worker meeting, so he rarely sees the adult placement worker. Dan's carers find the Adult placement scheme very supportive-'second to none'.
- very few service users in the practice survey had an active social worker or care coordinator; cases were generally closed following placement and initial review.
- adult placement workers in several schemes were increasingly taking on the social work role with service users, supporting both the user and carer in the placement. This sometimes created difficulties and conflict for schemes and carers: several carers interviewed resented their adult placement worker's shift of focus to the service user. They said that they felt unsupported, and there was some evidence that this affected their long-term commitment to adult placement.
- most of the service users spent some time in jobs, day services, or at college, and a few would go out on their own. Several people were out all day, every day (some carers also have day jobs). Service users were generally happy with these activities, and some were enthusiastic.
Molly has a paid job at the local stables; Len looks after trolleys at a local shop; Cath does odd jobs for a garden maintenance project; Harry chose his placement in part because of the freedom it gave him to come and go as he pleases, and Terry likes to go round the shops with her carer; Tom prefers to take part in bird watching and other activities enjoyed by his carer.
Hirst (2000) (9), refers to '. plenty of anecdotal evidence among social workers of the benefits of a one-to-one caring relationship' offered in adult placement.
A number of journal articles over the last decade have described the benefits to service users of this model of social care, describing adult placement as, for example, the 'epitome of community care' and 'one of the unheralded success stories of the shift to community care'. (10)
Three Social Services Inspectorate (SSI) inspections noted (and praised) adult placement services, but gave few details. An SSI inspection of services for disabled people in Bolton (11) in 2002 found '.there were positive examples of developments [in line with an inclusive model of disability] in the adult placement scheme', and recommended expansion of the service. The only specific reference, however, was to a befriending scheme valued by service users.
In 2003, SSI carried out an inspection of learning disability services in nine councils in England 12, looking at progress made toward delivery of principles set out in 'Valuing people (4). The report described a lack of adult placement schemes in some councils as 'a serious omission as such schemes were well liked by carers and offered a cost-effective solution to the challenge of re-providing services'. The sole example of good practice (Leicestershire) noted that family carers particularly valued this short-term break scheme and its flexibility, and the 'positive relationships that developed between the family and substitute carers'.
An SSI inspection (13) of short-term breaks for disabled and older people (focusing on how arrangements affected carers) found that the Croydon Partners in Care scheme was a 'well thought through and praiseworthy way of providing short-term breaks within "real homes" that were small registered homes' (not referred to as adult placement), but recommended developing breaks in service users' own homes.
Many journal articles also extolled the virtues of adult placement. (9) (14-17) Supporters of adult placement include the Director of East Sussex Social Services (18) who referred to the 'scandal' of only 6,500 placements in England, and a service user and member of the National Forum of People with Learning Disabilities(19) who wrote about losing her much-loved placement because her carer could not cope with registration.
Robinson and Simons (1996)(20) found that carers consistently identified one of the factors defining adult placement as a 'strong emphasis on family life' but researchers found a few services that 'did not appear to constitute "family life"'. The authors summarise the areas of main concern to service users with learning disabilities-house rules, privacy, keys, transport, telephone, money, holidays-and conclude that adult placement 'particularly provided what many users wanted'.
The views of people with learning disabilities in adult placements were gathered as part of a Tizard Centre study (20, 21) of user focus groups and Best Value in services. Overall the group 'reported positive experiences of adult placements and wished them to continue'. Service users talked about the family nature of their placements, and said that their carers were 'kind' to them.
The practice survey confirms the Robinson and Simons (1996 )(20) finding that most people with learning disabilities were positive about (and wanted to stay in) their long-term placements. It shows that long-term placements are providing the 'family life' that defines adult placement.
The challenge of being person-centred in adult placement
Being person-centred goes way beyond the issue of a person's bedtime. It is about far more fundamental issues, and includes having the support and structure with which lives can be much more fulfilling and meaningful.
This means that every placement will be different from the next. For some people, working in a person-centred way might be making sure they are able to get up every morning. For others it might be finding a job, a social life, and things to do that develop interests and skills, just like everyone else.
It is important that the changing needs and wishes of people in placements are sought and identified. Person-centred plans are not static documents. People grow and develop (often very rapidly) after they move into an adult placement. Families also change, and a placement that was originally well suited to a person can become less suitable. Placement reviews should identify the changing circumstances of the family, changes in the needs and requirements of the person placed and the continuing suitability of the placement.
Tensions between person-centred approaches and adult placement must be recognised. The person is living as part of a family, and in any family the needs and wishes of all household members have to be considered.
In families there is constant compromise and negotiation. A fully person-centred approach may have a detrimental impact on other family members. This tension needs to be recognised and acknowledged. The service user's wishes and choices must have the same weight as the wishes and choices of other family members.
Mary is spending a great deal of time helping Colin develop a day-time routine that gives him a reason for getting up and does not exhaust him. Colin tries to get to the gym several times a week. Mary begins the process of waking Colin up at about 10am, and they go out together later in the morning. Some days Colin finds it easy to get up; other days he spends most of the day in bed. Colin has some difficulties around food; he gets his own breakfast, and Mary keeps the fridge stocked with things that Colin likes. She cooks a meal and Colin can choose whether to eat the meal or get himself something else. Colin doesn't much like food shopping-he will go with Mary but under sufferance. Colin is beginning to expand his repertory of meals, and is learning to cook the things he likes to eat.
Mary has been supporting Colin to handle his medication better. Because of Colin's disturbed sleep pattern he wouldn't always remember whether he had taken his medication, and some days would miss it altogether or take two doses. Together they have set up a 'nomad' system, which Colin now manages; this is working well and his medication is reducing.
What does this mean for carers?
There is a challenge for some more established carers, who may be used to doing things in a particular way. They were often recruited to provide a 'home for life' and the focus of their work was 'caring for' and 'keeping safe'. These adult placement carers are now being asked to work in a very different way. They are now being asked to support the service user to become more independent, and think about moving on. Perhaps the key issue here is 'what is good enough?'
Schemes have had to acknowledge that change is unlikely. They have then had to make a judgment call about whether the benefits of the placement for the person outweigh any negative aspects.
In longer-standing placements, schemes spoke of 'going slow' in putting in place new placement plans, 'ratifying'-rather than risk upsetting-existing arrangements. The scheme also spoke of 'winning over' old-style carers to a more person-centred way of working; one carer called it an 'evolutionary approach'.
It was clear from the practice survey that some carers are being person-centred, but do not use that terminology to describe what they are doing. However, there is a contract between the local authority, adult placement scheme and carer that comes with certain expectations about the care of the person placed.
Training need not be presented as a chore, but as an opportunity to learn from other carers, as well as develop formal and informal support mechanisms.
A mental health nurse visited at first, but decided that Sarah was already doing what the nurse was meant to do. Sarah has worked hard with John on relationships, sexuality, communication, and things like 'who would you go to if you needed help'. She tried to teach John how to read, and he can now recognise a few words to associate with feelings (happy, sad, angry). John started college but could not pass the written test, which is a condition of college funding, so Sarah decided with John to concentrate on what he was able to do. John is enthusiastic about his twice-weekly job at the local stables. He likes all outdoor and physical activities, which he does with Frank. Although it took John two years to learn to swim, he loves it now.
John wants to be 'normal'. He does not make friends, and his life is with Sarah and Frank (and their children and grandchildren). He is usually acquiescent ('he likes to do the things we do'); and is likely to say 'yes' to whatever is offered to please them, but they can tell by his face when he means 'no'. John needs frequent prompting for personal and household tasks, but does not need firm rules. But John can become angry and 'up-close'; Sarah and Frank have strategies for helping him calm down, but have to be careful with him in company. They are certain that John knows he can come to them for support and love.
Can direct payments help?
Whilst this was not raised in the practice survey or literature review, it is certainly an issue worth thinking about in adult placement.
A direct payment is money given to an individual by a social services department to buy the support they have been assessed as needing. This is in lieu of services and there is no set financial limit. Guidance on direct payments, including easy-read versions, can be found on the Department of Health website.
Payments can be made for day-to-day things such as dressing, cooking, driving, bathing children, and support to facilitate discharge from hospital. But perhaps more importantly, for adult placements it can be used for social activities-visiting friends, evening classes and college, gardening-as well as assistance to access training and employment. These are areas that may well be part of someone's person-centred plan.
Direct payments are flexible and can be used as part of a combined package. For example, a care package can be provided partly through direct services, such as a day centre, and partly through direct payments, enabling someone to live independently and choose their own support.
A change of culture is required, and this is never easy. However, direct payments could make person-centred planning more achievable, and if we are to move towards individual budgets, as proposed in the green paper, service users should have greater autonomy. This is further reinforced in the Strategy Unit report 'Improving the life chances for disabled people' (22)